Five years ago, a Seattle hospital made headlines for operating on a 6-year-old girl with severe brain damage that left her unable to walk or talk, and left her as dependent on her parents as an infant.
Her parents chose a type of surgery for Ashley that will keep her small, making it easier to care for her, using something called growth attenuation therapy. The girl’s uterus and breast buds were removed. The therapy involved high doses of estrogen, and the result was that Ashley is now, and forever, a child.
Last month, the National Disability Rights Network issued a report reflecting on this kind of treatment, citing other cases and questioning whether such a procedure, now known as “Ashley Treatment” or “Ashley Therapy,” represent a slippery slope toward diminishing the civil rights of the disabled.
“In my more than 30 years as a disability rights attorney and advocate, I often think that I have seen every type of discrimination and harm inflicted on people with disabilities. Unfortunately, humanity still finds a way to surprise and shock even me,” wrote Curt Decker, executive director of the organization, in the report.
“Every person is born with civil and human rights and an inherent dignity. The presence of a disability does not change that fact. Yet, every day people with disabilities have to fight to be recognized as a whole person. Yes, we have made many positive advancements like the Americans with Disabilities Act and the movement to end institutionalization. However, when something like the Ashley Treatment is permitted, even encouraged, it is a slippery slope toward a world where people with disabilities have no value, no rights, and no dignity.”
NDRN has a number of recommendations for the medical community, insurance companies, state legislatures, and the U.S. Department of Health and Human Services regarding Ashley Treatment. They aren’t asking for an outright ban, but they do want to be sure that the civil rights of children whose parents are considering the therapy are fully protected.
• Hospitals and medical providers must go beyond convening ethics committees before performing medical procedures;
• Insurance shouldn’t cover procedures where steps weren’t taken to protect the rights of the person with disabilities in question;
• Lawmakers should establish those steps, including requiring the assignment of a guardian ad litem who represents the person with disabilities;
• Hospitals and medical providers who perform such procedures without taking all steps needed to protect the civil rights of the patient should lose federal funding and be publicly humiliated.
In Ashley’s case, the Seattle hospital eventually admitted it hadn’t taken all the necessary steps needed to comply with state law before treating Ashley. In this article, The Guardian talked with Ashley’s father this year about their now years-old decision.
“The Ashley treatment has made her far more likely to be comfortable, healthy and happy,” her father told the newspaper. “Given the limitations imposed by her medical condition, her life is as good as we can possibly make it.”
A version of this news article first appeared in the On Special Education blog.